scholarly journals Co-constructing ancestry through direct-to-consumer genetic testing

2021 ◽  
Vol 30 (2) ◽  
pp. 30-35
Author(s):  
Alexander Lang ◽  
Florian Winkler
Keyword(s):  
Genetic Testing ◽  
Social Impact ◽  
Qualitative Interviews ◽  
Relevant Literature ◽  
Genetic Ancestry ◽  
The Internet ◽  
Recreational Activity ◽  
Direct To Consumer ◽  
Website Analysis

Direct-to-consumer (DTC) genetic ancestry tests offered via the internet supposedly uncover the ancestry of those tested. While these tests might be seen as a means to find a biologically inscribed and fixed genealogy, this paper explores how companies and customers co-construct ancestry through genetic ancestry testing. The study draws on a review of relevant literature, qualitative interviews with experts and stakeholders, a website analysis, and an autoethnographic self-observation. It shows how DTC genetic testing companies create specific concepts of ancestry in their marketing, development of specific databases, and presentation of results, but also how users interpret and incorporate their results into their own genealogies and lives. Looking at the potential social impact of DTC ancestry testing, the paper questions its categorization as recreational activity or entertainment.

Platform Biosensing and Post-Genomic Relatedness

Living Data ◽  
2019 ◽  
pp. 93-124
Author(s):  
Celia Roberts ◽  
Adrian Mackenzie ◽  
Maggie Mort ◽  
Theresa Atkinson ◽  
Mette Kragh-Furbo ◽  
...  
Keyword(s):  
Big Data ◽  
Genetic Testing ◽  
Aggregate Data ◽  
Genomic Variation ◽  
The Internet ◽  
Direct To Consumer ◽  
Genetic Risks ◽  
Dna Variations ◽  
Dna Genotyping ◽  
Genomic Relatedness

How does direct-to-consumer genetic testing alter our perceptions of health, reproduction, families and futurity? DNA genotyping is a form of biosensing concerned with genetic risks, susceptibilities and relatedness. This chapter argues that genotyping services such as 23andMe prompt us to take seriously the platform realities of biosensing. DNA genotyping platforms attempt to aggregate data on an unprecedented scale, to anchor the significance of DNA variations for health and kinship, and to connect DNA variations to health practices and health futures. The biosensors commonly used in DNA genotyping are microarrays. Their architecture and the scale of data they produce are prototypes of scientific big data. The internet platforms and products associated with direct-to-consumer DNA genotyping embody a personalizing approach to health and medicine, even though the connections between underpinning scientific findings concerning genomic variation and clinical interventions or treatments are mostly tenuous. At the same time, because the significance of the million or so variations reported in a typical DNA genotype is mostly undefined, the data has led to many attempts to create new connections, to experiment with novel collective forms of analysis and treatment, and to build new relations between biology, medicine and everyday life.

scholarly journals Direct-to-Consumer Genetic Ancestry Testing in Clinical Encounters: Perspectives From Psychotherapy Cases (Preprint)

2020 ◽  
Author(s):  
Caryn Kseniya Rubanovich ◽  
Wendy Zhang ◽  
Cinnamon S Bloss
Keyword(s):  
Genetic Testing ◽  
Personal Experience ◽  
Genetic Ancestry ◽  
Evidence Based ◽  
Future Directions ◽  
Direct To Consumer ◽  
Clinical Encounters ◽  
Health Related

UNSTRUCTURED Despite the fact that direct-to-consumer (DTC) genetic ancestry testing (GAT) has been available for two decades, there is a lack of evidence-based guidance for clinicians who may work with patients who raise the topic of DTC-GAT. Although DTC-GAT accounts for the majority of the DTC genetic testing marketplace, it has received less attention than health-related testing from scientific and clinical communities. Importantly, however, from our personal experience, patients have been raising the topic of DTC-GAT in clinical encounters, including psychotherapy sessions. In this viewpoint, we present two cases of patients seen by two of the authors to raise awareness of this issue. We describe the implications of DTC-GAT for patients and clinicians, offer recommendations, and suggest future directions.

Direct-to-consumer Genetic Testing: Changes in the eu Regulatory Landscape

2015 ◽  
Vol 22 (5) ◽  
pp. 463-480 ◽  
Author(s):  
Santa Slokenberga
Keyword(s):  
Genetic Testing ◽  
Transition State ◽  
The Internet ◽  
Genetic Tests ◽  
Direct To Consumer ◽  
Performance Requirements ◽  
Major Shift ◽  
Regulatory Landscape ◽  
The Eu

Rapid advances in genomics and technology have rendered genetic testing services easily accessible to consumers over the Internet in the form of direct-to-consumer genetic testing. In the eu, the ivd Directive has been animadverted for its inability to tackle the challenges direct-to-consumer genetic testing has posed. Currently, the eu legislation is in a transition state. It is thus, timely to assess, to what extent the proposed ivd Regulation is intended to address the performance requirements and utility of direct-to-consumer genetic tests, which are made available to consumers within the eu over the Internet, and discuss the developments vis-à-vis the ivd Directive. To compare with the ivd Directive, the ivd Regulation presents a major shift in how direct-to-consumer genetic testing is treated in the eu. It remains unclear, whether and how the eu requirements can be applied beyond the eu market.

Buying your Self on the Internet

2019 ◽  
Author(s):  
Andelka M. Phillips
Keyword(s):  
Genetic Testing ◽  
Health Conditions ◽  
The Internet ◽  
Personal Genomics ◽  
Peace Of Mind ◽  
Direct To Consumer ◽  
The World ◽  
Different Types ◽  
Consumer Services ◽  
Specific Regulation

The personal genomics industry (aka direct-to-consumer genetic testing) has created a market for genetic tests as consumer services. This has taken genetic testing out of the clinic and into people’s homes. The industry is diverse offering tests for various health conditions and ancestry, as well as more dubious tests, such as ‘peace of mind’ paternity, ‘infidelity’ (or surreptitious testing), child talent, and even matchmaking. It is growing rapidly, but at present many tests are not standardized and the industry has not been subject to specific regulation. As with many other Internet based industries, companies tend to rely on their electronic wrap contracts to govern their relationships with their consumers. This book provides an introduction to the world of personal genomics and examines the rise of the industry and its use of ‘wrap’ contracts, drawing upon the author’s review of the contracts of 71 companies that provide tests for health purposes. It explores the different types of tests available and the issues that this industry raises for law and for society.

scholarly journals Direct-to-Consumer Genetic Ancestry Testing in Clinical Encounters: Perspectives From Psychotherapy Cases

10.2196/23596 ◽  
2020 ◽  
Vol 7 (11) ◽  
pp. e23596 ◽  
Author(s):  
Caryn Kseniya Rubanovich ◽  
Wendy Zhang ◽  
Cinnamon S Bloss
Keyword(s):  
Genetic Testing ◽  
Personal Experience ◽  
Genetic Ancestry ◽  
Evidence Based ◽  
Future Directions ◽  
Direct To Consumer ◽  
Clinical Encounters ◽  
Health Related

Despite the fact that direct-to-consumer (DTC) genetic ancestry testing (GAT) has been available for two decades, there is a lack of evidence-based guidance for clinicians who may work with patients who raise the topic of DTC-GAT. Although DTC-GAT accounts for the majority of the DTC genetic testing marketplace, it has received less attention than health-related testing from scientific and clinical communities. Importantly, however, from our personal experience, patients have been raising the topic of DTC-GAT in clinical encounters, including psychotherapy sessions. In this viewpoint, we present two cases of patients seen by two of the authors to raise awareness of this issue. We describe the implications of DTC-GAT for patients and clinicians, offer recommendations, and suggest future directions.

Experiences of individuals receiving “Not Parent Expected” (NPE) results through direct-to-consumer genetic testing

2021 ◽  
Vol 132 ◽  
pp. S289
Author(s):  
Julia Becker ◽  
Janey Youngblom ◽  
Brianne Kirkpatrick ◽  
Liane Abrams
Keyword(s):  
Genetic Testing ◽  
Direct To Consumer

scholarly journals An exploratory assessment of the applicability of direct-to-consumer genetic testing to translational research in Japan

2021 ◽  
Vol 14 (1) ◽  
Author(s):  
Masahiro Inoue ◽  
Shota Arichi ◽  
Tsuyoshi Hachiya ◽  
Anna Ohtera ◽  
Seok-Won Kim ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Translational Research ◽  
Drug Target ◽  
Target Genes ◽  
Healthy Individuals ◽  
Alcohol Sensitivity ◽  
Direct To Consumer ◽  
Disease States ◽  
Multiple Phenotypes ◽  
Related Phenotype

Abstract Objective In order to assess the applicability of a direct-to-consumer (DTC) genetic testing to translational research for obtaining new knowledge on relationships between drug target genes and diseases, we examined possibility of these data by associating SNPs and disease related phenotype information collected from healthy individuals. Results A total of 12,598 saliva samples were collected from the customers of commercial service for SNPs analysis and web survey were conducted to collect phenotype information. The collected dataset revealed similarity to the Japanese data but distinguished differences to other populations of all dataset of the 1000 Genomes Project. After confirmation of a well-known relationship between ALDH2 and alcohol-sensitivity, Phenome-Wide Association Study (PheWAS) was performed to find association between pre-selected drug target genes and all the phenotypes. Association was found between GRIN2B and multiple phenotypes related to depression, which is considered reliable based on previous reports on the biological function of GRIN2B protein and its relationship with depression. These results suggest possibility of using SNPs and phenotype information collected from healthy individuals as a translational research tool for drug discovery to find relationship between a gene and a disease if it is possible to extract individuals in pre-disease states by properly designed questionnaire.

scholarly journals Feasibility and Assessment of a Cascade Traceback Screening Program (FACTS): Protocol for a Multisite Study to Implement and Assess an Ovarian Cancer Traceback Cascade Testing Program

2021 ◽  
Vol 11 (6) ◽  
pp. 543
Author(s):  
Anna DiNucci ◽  
Nora B. Henrikson ◽  
M. Cabell Jonas ◽  
Sundeep Basra ◽  
Paula Blasi ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Genetic Testing ◽  
Health Care Providers ◽  
Screening Program ◽  
Qualitative Interviews ◽  
Care Providers ◽  
Genetic Privacy ◽  
Program Outcomes ◽  
Cascade Testing ◽  
Program Costs

Ovarian cancer (OVCA) patients may carry genes conferring cancer risk to biological family; however, fewer than one-quarter of patients receive genetic testing. “Traceback” cascade testing —outreach to potential probands and relatives—is a possible solution. This paper outlines a funded study (U01 CA240747-01A1) seeking to determine a Traceback program’s feasibility, acceptability, effectiveness, and costs. This is a multisite prospective observational feasibility study across three integrated health systems. Informed by the Conceptual Model for Implementation Research, we will outline, implement, and evaluate the outcomes of an OVCA Traceback program. We will use standard legal research methodology to review genetic privacy statutes; engage key stakeholders in qualitative interviews to design communication strategies; employ descriptive statistics and regression analyses to evaluate the site differences in genetic testing and the OVCA Traceback testing; and assess program outcomes at the proband, family member, provider, system, and population levels. This study aims to determine a Traceback program’s feasibility and acceptability in a real-world context. It will account for the myriad factors affecting implementation, including legal issues, organizational- and individual-level barriers and facilitators, communication issues, and program costs. Project results will inform how health care providers and systems can develop effective, practical, and sustainable Traceback programs.

Sign in / Sign up

Export Citation Format

Share Document